Friday, September 21, 2012

Mixed feelings... I think...

I have a lot of mixed feelings today and I'm sure they will be with me at least through the weekend if not longer.  Tomorrow the 22nd will be Nicole's last day as a minor and my last day as her legal guardian.  On Sunday, she will be a legal adult. 

I wish I knew what it felt like in this situation in a perfect world but I do not and I only know what it feels like with our circumstances and our life.  I don't think it would be such a problem for me if Nicole wasn't chronically, terminally ill.  All the issues that I deal with on her behalf as her legal guardian/parent no 18 year old should be expected to be able to do themselves.  On Monday I will take Nicole to the bank for the notarization giving me power of attorney over her finances and health issues.  I struggle with this because of criticism from others that I need to let her go as she is an  adult.  I would agree with this but I also know my daughter and she isn't capable of this at this point in her life.  I don't want to take away her decision-making I just want to be able to take the bulk of  the stress away from her as it is detrimental to her health.  She is also still in high school. 

I am having a hard time getting my thoughts in order so I hope that I am making sense.  I feel that I am losing all control and that my job as her mom/legal guardian at least in the eyes of the world, medical community etc. is over.  I know logically that I will always be her mom but she will be expected to make her own decisions and I have no say in that other than to Nicole if this is what she wishes. I will always support her in all her hopes, dreams, problems etc. and will do anything I can to help her.   I have done my job raising her so now she can move forward with those morals and values and make her mark in the world and I know she has awesome potential to do this but it saddens me that she doesn't see this.   I also feel that our relationship will be different but I don't know what this means or looks like. 

I don't think that I would have such an emotional struggle with this if  Nicole was healthy but she is not so we have to adjust accordingly but I know I will have to battle for this harder than I did as her legal guardian.  Social Security doesn't recognize power of attorney so I had to request and was granted representative payee status that gives me authority over Nicole's SSI checks and I am the one accountable to how that money is spent and for what. Nicole and  I will come up with a budget and her expenses together but I will handle everything pertaining to bill payment etc.     Children's Medical Services doesn't recognize power of attorney only legal guardianship.  In order to get legal guardianship I have to go in front of a judge and even if Nicole agrees to it ... she will have no rights and her decision making will be taken away and I don't want to do this. 

At the same time as the power of attorney is complete Nicole will also name me as her health care surrogate.  I know that she needs to do a living will but I haven't been able to find a way to approach her about this subject.  It will be hard for her to deal with because of her anxiety issues and it isn't fun conversation to begin with.  In light of the fact that a transplant is down the road at some point this is very important to have. 

I know that this is just another day and the world will not end we will just move forward as we have been but a little differently.  I will still be an advocate for her and I will do everything I can with her medical issues to take this burden off of her as she carries enough just trying to get through each day so if I have to take calls and talk to doctor's, pharmacies, do her medicine etc this is the least I can do. 

I hope that she always knows that no matter what she does I will always love her and this will never change. 

1 comment:

  1. Jane... so beautifully written. Thank you for sharing this part of your world with us. It was an angle to the PH experience I had not yet encountered. Hugs and faith to you - I know you two will continue to get through this together, legalities are just that... legalities. The bond of mother and daughter doesn't change because of paperwork, right? You are an amazing mom. Thanks for being a part of our community.